Sunday, July 31, 2005

We knew from the start that we were going to be pushing it this weekend. We were doing a fly-in/fly-out for a family wedding, which meant a full day of air travel on Friday (two planes and a lengthy layover in between)followed by a late night big-crowd dinner, then a late-night wedding on Saturday and an early morning flight out on Sunday. We had the essentials at the ready: iPod loaded with Bud-friendly music, portable DVD player and all the favorite discs, toys, books, snacks. Bud was amazing all weekend long. With the exception of a few minor cranky moments (his and ours), he was a trooper and I think he even had a good time. So we were breathing a sigh of relief when, after only about six hours of sleep we were at the airport with plenty of time to spare for the first leg of our flight this morning.

We shouldn't have exhaled quite so soon. The second leg of our flight was delayed, though not by a lot, so we were still in good spirits when we boarded and found our seats in the very last row of the plane. The seat in front of us was filled by an off-duty pilot being flown to his next assignment. A few minutes later, a flight attendant arrived to tell him there was a space in first class and he vacated that row, leaving room for another family in the back to redistribute themselves.

Before I go any further, I should point out two important pieces of information about Bud: 1) Lately he has been reacting very poorly to other children who he believes are muscling in on his territory. If we are at the playground, or the train table at the toy store or a particular tidal pool at the beach and another child approaches, Bud loses it: "No! That's mine! You go away, boy!" I have learned that this is not a time for rationalizing or negotiation. This is a time to exit, and we do so quickly. 2) Bud rarely has a full-out meltdown. When he does, it is invariably because he is overtired and there is always a Point of No Return at which the meltdown becomes hysteria and is only resolved when he is so exhausted he passes out.

Back to my story... though I know you can see where this is going.

The new seat arrangement looked like this:

Back row was Bud at the window, me in the middle, my husband on the aisle.

In the row in front of us was boy (about 10) at window, boy (about 9) in middle, off-duty flight attendant trying to nap on aisle. Across the aisle from them was empty seat on aisle, boys' Mom in middle completely focused on boy (about 4) at window. In other words, the two boys in front of us were completely unsupervised.

I believe it started with the window, though I didn't really pick up on what was going on until later. Bud was opening and closing the slider on the windows next to him, including the window just to the front of him, and just behind the boy in front of him. The boy changed the positon of the shade. Bud protested and put it back. It happened again.

At this point, Middle Boy got interested in a "what's up with the kid behind us" sort of way, and started peering through the crack in the seats at Bud. This caused Bud distress and he again began to protest. I was still not clueing in on what was going on. I knew Bud was distressed, but I couldn't identify the source of the problem. I was also distracted because they kept making announcements telling us we would be delayed "just a few minutes more," so I don't know if Middle Boy was doing anything other than peering. I do know, however, that distress turned rapidly into freak-out.

I finally clued in and switched seats with Bud so that if Middle Boy peered through, he'd only see me. Unfortunately, Bud had passed the Point of No Return. He started shrieking "No! Stop it! This is no place for boys!" My husband and I tried frantically to calm Bud down, but every sound that came from the boys in front of us heightened Bud's hysteria. I quickly realized that the boys had recognized the cause-and-effect in action, and were playing it. The pattern went something like this. The boys would whisper-whisper-giggle, and Bud would shriek "No! Stop it boys! No talking!" and then, a bit louder, the boys would say to each other "Blah, blah, blah..." and Bud would go right over the edge of hysteria - blotchy-faced sobbing, head banging, screeching - until we could calm him down a little. As soon as he settled down, we'd hear "la, la, la..." from the seat in front of us, and it would all begin again.

My husband and I looked at each other in desperation. I assume his head was pouding as hard as mine, and that he was feeling just about as helpless and incompetent. I just kept thinking that the plane would start moving any second, and the sound of the engine would drown out the boys, and the movement of the plane would lull Bud to sleep. At the very least, we'd be able to turn on the DVD player and provide a distraction. I thought about approaching the boys' mother, but what would I say? Please ask your boys to be silent for the duration of the trip. Please ask them not to hum. It occurred to me that I might be mis-assigning bad intent to these boys simply because I wanted to blame someone.

Finally, I got up and climbed over the still-shrieking Bud and my harried-looking husband and approached the other Mom. "My son is autistic," I said. "And sometimes he gets triggered by other children. Would you mind switching seats with us?" She began to agree to move, but a swarm of flight attendants arrived. Okay, two, but it felt like a swarm.

"Ma'am, you need to take your seat.""Ma'am, you may switch seats once we are in the air.""Ma'am, please get out of the aisle."

I lumbered back into my seat while the giggle-hum-shriek fest continued. One of the flight attendants returned with a tiny airplane-packet of pretzels and offered them to the blotchy red mess that was my son. "If you're good," he said, "you can have these pretzels."

"He's autistic," I told him. "Good luck. I don't think pretzels are going to do it."

"Don't worry," he assured me. "Just take a deep breath. My daughter did this for an entire flight once. You're not bothering us. We're all just fine."

I turned to face the window and burst into tears. Did he really think I gave a hoot that Bud might be disturbing him? What veteran of air travel doesn't recognize that putting up with screaming children is just part of the package?

My son was in red-alert CRISIS. And worse, I believed he was being taunted right in front of me and I was completely at a loss as to how to stop it. It was as though all of the fears and anxieties that have been lurking just below the surface erupted in that moment:

Bud is unable to cope with people and life and the unexpected and it is much, much worse than I thought.Other children will tease him for sport, just because they can.No one will come to his rescue.Other children can be calmed down with pretzels. We are totally, hopelessly, and eternally screwed.

I stared out the window and sobbed and sobbed as the engines started and the plane lifted off, our 1:20 flight finally leaving the ground at 2:45 after an eternity in the Cramped and Stuffy Backseat of No Escape. My husband tapped me on the shoulder and I turned to see Bud sound asleep against his shoulder. I cried some more. The off-duty flight attendant brought me Kleenex. The mom across the aisle came over to see if we still wanted to switch seats. Bud continued to sleep through the rest of the flight, and woke when we touched down. After he had spoken a few sentences, the boys in front of us launched into a chorus of Hakuna Matata and the cycle was on the verge of starting again, but the other mom had finally keyed in and gave a stern word to her sons who were quiet until we got to the gate.

The boys were in line in the rest room at the airport a few people in front of my husband.

"Is he behind us?"

"Yeah."

"Does he look mad?"

"Yeah."

It wasn't all in my head. It was a game to them.

My husband and I were quiet in the car on the way home, except for a lot of heavy sighing. "We were right there," my husband said. "What's going to happen when we're not?"

Thursday, July 28, 2005

Yahoooo!!! Chaos and Creation in the Backyard, Paul McCartney's first album in nearly four years, is due out in September but you can listen to the first single, "Fine Line," here. If this single is any indication, CCB is going to be a great follow-up to 2001's Driving Rain.

Sunday, July 24, 2005

As many of you know, several months ago we made the difficult decision that it was time to try medication for Bud. As we have moved through this maze of trial and error I've been combing the blogs looking for some stories of actual people with actual children with ASD and their actual experiences with these medications. There is very little out there. So, for the sake of those who will someday google their way into this blog, here is a run-down of our experiences so far.

Our first trial was with Ritalin - first 5 mg, then 7.5 mg, then 10 mg. It had no effect whatsoever.

Next we tried Adderall - again a steady increase from 5 to 7.5 to 10. Adderall was a mixed bag. We saw great results - much less scripted language and more conversational language, greater focus, more pretend play. But the negative effects were significant: agitation and constant chatter or humming (not scripted language, but definitely not normal), sleeplessness, a major "crash" when the medication wore off - uncharacteristic temper and tears, accompanied by hitting his head (a behavior we hadn't seen in a long time), heightened anxiety, and loss of appetite. He also looked terrible - pale, drawn, with dark circles under his eyes. It was clearly not working.

Our most recent trial has been with a combination of 7.5 mg of Adderall and 10 mg of Strattera. Bud's doctor said it would take about two weeks to see the effects of Strattera. We saw them on day 1. Bud has been focused, calm, and engaged. On day 1, he participated in the group movement games at school - something they'd never seen before. They said that he usually looks like he's not paying attention to them and they had no idea that he'd been learning the songs and movements all along. He's using a lot less scripted language and much more conversational language. He's less obsessive about tv and computer time and is focused on pretend play. He's sleeping well and his appetite is back. And he looks like himself again - robust and healthy. We're feeling very optimistic.

Here's something I couldn't find on blogs, though I searched high and low: just how does one administer medication to a child with a limited diet whose sensory integration issues make texture and color of paramount importance? Here's what we did:

Ritalin: Ritalin comes in a white pill that can be crushed. Mixing it with ice cream was not successful, because the ice cream was too smooth to mask the powder. As Bud said "It's seeds. I want regular." Mixing it with applesauce worked well.

Adderall: Adderall comes in blue pills that can be crushed. However, it turns applesauce blue which was not acceptable. ("I want regular.") Adderall powder, however, dissolves (no seeds) so it can be mixed into juice. It also dissolves into yogurt, turning Rockin' Raspberry from a dark pink to a light purple, which was acceptable.

Strattera: Strattera only comes in capsules, which cannot be opened. This fact sent me into a panic, but as it turns out this has been the easiest medication to administer. I created a sticker chart with a big pay-off: 5 stickers yields the Boobah video he's been wanting for ages and I've been refusing to buy. Each time he takes his medication he gets one sticker. I put the capsule in jello, and he washes it down with juice. Easy way to earn a Boobah movie. (We're now on sticker chart 2: 9 doses earns a Teletubbies book. I find the sticker charts work best when the pay-off is something he knows he's not going to get any other way.) One other important step in the process: we practiced with mini M&M's before we moved up to the actual capsules. First I gave him a couple of M&M's to eat, to remind him that he liked them. Then he got to earn his first sticker by swallowing the M&M in jello without chewing. Once he mastered that, we moved on to the capsule. It worked like a charm.

There's our story. I'm still interested in hearing other people's experiences with medication, so if you've got a story to tell, please comment away!

One of the books I've enjoyed recently is Sarah Vowell's Assassination Vacation, a jaunty venture through the minutiae associated with the assassinations of Lincoln, McKinley, and Garfield. The book is part history lesson and part Addams Family-style travelogue. We join Vowell and a parade of good sports - family and friends who have clearly been through this sort of thing with her before - as she tours the country visiting gravesites, tracking down commemmorative plaques, and combing dusty shelves for glimpses of bone fragments and blood-stained garments.

One of my favorite vignettes involves Vowell's search for the site of the attack on Secretary of State W. H. Seward, which occurred on the evening of the Lincoln assassination and was part of the same plot. Her friend Bennett has been taken along on this pilgrammage, which involves setting out at 6:30 on a cold February morning to catch the Lincoln's Birthday wreath ceremony at the Lincoln Memorial before the Seward-site highlight for the day. She writes:

I lead him around the corner to the Court of Claims Building. In the coutryard, past the fountain, I point at a plaque, chirping "Ta-da! This was the site of Secretary of State Seward's house where he was stabbed in bed the night Lincoln was shot!"Bennett looks at the plaque, then back at me, wondering, "This is my surprise? A plaque about Seward?""Uh-huh!"He doesn't say anything for a while, just stands there reading the plaque, shaking his head...(then) looks at me, rolls his eyes, and silently trudges out of the courtyard..."Seward plaque"... has become our synonym for disapointment. When I break it to Bennett that I'm having trouble getting Fiddler on the Roof tickets, a musical he's keen on seeing because it reminds him of this grandmother's flight from the shtetl, he answers, "Whatever. I can take it. My people have been getting Seward plaqued for millennia."

Vowell also interjects (progressive) political commentary on the current state of affairs throughout the book. She draws a particularly interesting parallel between the state of the nation around the time of the McKinley administration and during the current Bush administration. To my surprise, this is a parallel I'd alluded to previously.

In previous posts, I've kept a running list and commentary on the books I've purchased and the books I've read. I've decided to stop doing that because of an essay I read recently. It was written by Glen David Gold, author of Carter Beats the Devil, and was published in Bookmark Now: Writing in Unreaderly Times, which is a compilation of essays by mostly twenty- and thirty-something writers about the writing process and the writerly life.

In Gold's essay, titled Your Own Personal Satan, he comes clean in a Writers Anonymous sort of way about an addiction he's working hard to beat: googling himself. At the time of publication, Gold had identified 6,950 pages that mentioned him and he had set out to view them all. The tongue-in-cheek essay, in which Gold takes us through the anticipation and let-down he experiences in his quest, is very funny. But it's also eye-opening. It had honestly never occurred to me that an author might google his way into my blog and be insulted by what he read. (And, coincidentally, the point was reinforced because I had, in fact, written previously about Glen David Gold, and while I believe I was very complimentary I don't know that Gold would see it the same way. Hi Glen, if you're reading.)

So, anyway, I'm not going to keep an ongoing list of books I buy but never get around to reading (she read Harry Potter before she read my book?) or books I've read but didn't like (but that's an absurd interpretation of what I was trying to say!) I'll stick to the highlights in the hopes that, should a writer pop in for a visit, my words will only serve as a little ego boost.

Friday, July 22, 2005

I've recently recognized a theme that runs through many of the blogs of parents of children on the autism spectrum. It seems that our kids seem to be drawn to water. It is certainly true of Bud. We spend lots of time at a nearby lake, where he splashes and bobs and floats for as long as we'll let him. Today we spent the day at the ocean, and for Bud the experience was lake- times-ten. He exuded joy from every pore as he jumped the waves and submerged himself in the cold Atlantic waters. The beach was packed today; there were kids everywhere. I watched the other children. They had fun. But they didn't seem to be having the same sort of experience as Bud. For Bud, being in the ocean is like coming home; in the water he is, quite literally, in his element. I've seen similar sentiments written by lots of parents of ASD kids.

Intuitively I think there must be something to this - something that is also related to the fact that our kids appear to be some sort of human barometer. As Charlie's mom says, there is a great research project here just begging to be done.

Monday, July 18, 2005

One of Bud's favorite activities these days is photography, and I am starting a photo album of the world as seen by Bud. Here are a few of my current faves.

I call this one "Facing My Fears." Bud has recently developed a mild phobia of this staircase. He used to dart up and down it, but in recent weeks he's been sitting and scooting down step by step. Perhaps this shot depicts his psychological dominance over the stairs. Or maybe he just thought it looked cool.

Many of Bud's "compositions" feature his videos. We have full montages of the same videos - close up, in shadow, set up in careful collages. I like the artistic angle featured in this shot.

This shot features the newest members of our family, Bud's pet fish Dorothy and Stevie. It also features a nice close-up of some fish waste, or as Bud announces when it's time to change the water, "There's poop EVERYWHERE!"

Thursday, July 14, 2005

You know how some days just feel more autistic than others? Today was a very autistic day for Bud. In her post "A little bit of Hollywood (#20)," Charlie's mom submits the hypothesis that "a change in the barometric pressure--as when a storm is gathering in the sky, all gray thundering clouds and moisture accruing in the air--seems to occur parallel with a behavioral squall in Charlie." I hadn't specifically noticed the pattern before, but I had an instant "a-ha" moment when I read that.

There have been thunderstorms brewing outside since morning. The air is thick and heavy and is waiting, waiting, waiting for the coming storm that threatens and looms. And poor little Bud has been a mess all day.

This morning he was uncharacteristically weepy. "Bud's sad," he said, as his Nana helped him get ready for school and talked about all the fun things he'd do there. He only responded with more tears. "But you don't love school!" he told her. And as I loaded him into the car for the long mournful drive to school, he enumerate the many reasons why this was a bad idea: "But I'm too big. School is too early. But school is loud. It's too late for school, Mama."

Somehow he made his way through his time at school (coincidentally the day his kindergarten teacher chose to come and observe him... figures, right?) The teachers didn't get into detail but said "he wasn't himself."

After school, Nana took him to Dunkin' Donuts - usually a favorite treat. But the Munchkins went uneaten and Bud went into manic phase, approaching truck drivers with uncharacteristic bravado and loudly scripting from Sesame Street, "Are YOU my mystery friend???"

Tonight there was a happy lull while he played Mr. Potato Head with his dad, and I made the very grave error of allowing him to stay up much too late. As a result, bedtime was a dreary mess of tears, sobs, snot, kicking, scripting and pleas that made very little sense: "No, Mama, No! What are you doing?! Stop it, Mama! Waitwaitwaitwaitwaitwaitmama! Mama, no!" I'm sure if the neighbors could hear him they'd think I was beating him, and not sitting next to him trying to read Curious George. I piled him into his swing to try to get some sensory regulation going, but he kept the monologue running: "Oh no no no! Mama, I need something bigger! I need something bigger! PLEASE, Mama!" The poor kid just spiraled out of control until he finally wore himself out.

I've been scratching my head all evening. Did I accidentally give him the wrong dose of Adderall? But I didn't. I know I didn't. I think that Charlie's mom is on to something. The storm is brewing, and it's closer than we know.

Can you tell a lot about a person from the contents of her iPod? I'm not sure. It's not the same as looking at someone's cd collection. When you buy a cd you are making some level of commitment (albeit a $15.99 one) to an artist. Or at the very least you are making a statement that says "I am willing to take a $15.99 risk on you." Not so with the iPod, where the greatest risk you run is spending 99 cents on a song that doesn't have staying power. (That may not be the greatest risk, actually. Once you start downloading it can trigger repressed memories from the glory days of Napster, sending you on a long and very expensive bender. But I digress.)

The iPod also makes being fickle very easy. I find that from day to day the songs I'm zapping through and the songs I'm listening to are radically different. Maybe you could tell a lot about a person if you charted her iPod habits over a period of time. Regardless, here are some of the high-rotation songs on my iPod this week. Well, today anyway. What do you suppose they say about me?

Bud hates the telephone. He doesn't like the disembodied voice of someone he loves blaring out of the receiver. When one of us is out of town, no matter how much he misses us and pines for us to come home, he'll only shout "Hi Daddy!" or "Hi Mama!" into the phone and quickly dart away. Or he'll just shout to the phone from across the room.

Bud spent this morning at my office with me, and was home with his Nana in the afternoon. I spent the afternoon in a flurry of meetings and got back to my office to find that I had voice mail waiting for me. Imagine my surprise when I heard this:

Our own "ABA-style" (in quotes because actual practioners of ABA would probably shudder at this assertion; it's much more a flying-by-the-seat-of-our-pants sort of thing) reward systems (sticker charts and earned chips) to target very particular goals like using the toilet, writing his name, and going to sleep by himself

Last week I attended a two-day workshop on RDI, Relationship Development Intervention, an approach to working with people on the autism spectrum that was developed by a huband-and-wife team, Drs. Steve Gutstein and Rachelle Sheely. I still feel like I have a very basic, rudimentary understanding about the program, but I am very excited about it. As I've said before, I think that deciding which approaches will work with your child is a very intuitive process, and this one feels intuitively right for Bud. I'll try to explain it, with the caveat that 1) I may not be explaining it well, and 2) I may not be getting it all right.

As Dr. Gutstein said as he opened his presentation, RDI begins with the basic assumption that people on the autism spectrum are human beings, by which he means that the fundamental processes of human development are the same for people on the autism spectrum as they are for neurotypical people. RDI breaks down neurotypical development in the first two years of life into 28 levels, and identifies for each person on the spectrum at which of those levels the breakdown in their development occurred. The focus of RDI is remediation, or going back to that level for a "do-over," getting that skill, then moving on to the next one.

Remediation is a radically different approach to ASD than many of the popular interventions which are focused on compensation; in other words, they identify which skills a child doesn't have and then train them in a very "if this, then that" rule-governed way to get by. The problem is that learning skills in such a rote manner doesn't really help children to function fully in the world. They may be able to learn that when someone says "How are you?" the right response is "I'm fine. How are you?," but it won't make them care how you are. It's that caring element that is at the core of our humanity, and at the root of our genuine, meaningful interaction with other people. THAT is what I want for Bud.

I use this analogy to help understand it: Pretend you're on your way to the wedding of two people you love. The wedding is in an unfamiliar area, and as you're driving there you get hopelessly lost. This is similar to what happens in the development of people with ASD during the first two years of life; they are on their way, and then suddenly they are hopelessly lost. Most interventions for ASD try to help them compensate for this loss; they find a side street and lead you to a different church with a different wedding going on. It might be a lovely wedding with nice music, but it probably won't have a lot of meaning for you. In contrast, RDI will help you retrace your steps and figure out where you took that first wrong turn, then will systematically lead you to the right church and the right wedding. You'll probably get there late; but you'll be there in time to see the happy couple kiss.

And to me, THAT is the key element of RDI that I walked away with; as Dr. Gutstein said, "This is a marathon, not a sprint." This is a long-term goal with a life-changing pay-off. So, rather than mix metaphors maybe we should imagine that you actually need to run the 26.4 miles to this wedding. You won't be able to do it without making short-term compensations along the way: you'll have to stop to rehydrate; you may have to go to the bathroom; you may need to stop and tie your shoe. But ultimately, you will know all along that the wedding is your destination.

And so it is with RDI. Bud will need to learn write letters and color in the lines. He'll need to learn to tell us when he has to go to the bathroom. He'll need to be able to put his pants on, right side out and not backwards. And there are lots of great approaches we can use to help him learn how to do those things. But at the same time, every day in a multitude of small but thoughtful ways we need to work on remediation, on gaining the life skills he'll need to integrate, synthesize, adjust, and respond; and we always need to keep our eyes on the prize, the long-term end of the marathon: meaningful relationships with other people, a real job, the ability to live independently. These are the things I want for Bud, and ultimately, I believe that these are the things he will want for himself. Marathons are hard work; I know that. But it's time to start training.

Monday, July 04, 2005

As a parent who has struggled with the decision to give my child medication, I am particularly horrified that he seems comfortable not only with dispensing medical advice, but also with passing judgment on people in serious need. And as a professional who has worked with young adults at an age when mental health issues often begin to emerge, I have seen first-hand - repeatedly - the profound difference that good counseling and the right medication can make in helping someone reclaim control of life and restore a sense of balance and well-being.

Wouldn't it be ironic if Tom's erratic behavior turns out to be the manic manifestation of a bipolar disorder? Nothing a little lithium couldn't fix...

As Bud becomes more verbal and develops a more conversational command of language, I am growing increasingly aware of just how literal-minded he is. For those who don't know him well, this literal-mindedness manifests in a way that seems remarkably wise-assish. This week, I had Bud at the office with me and a colleague approached him and said, "Bud, I like your shoes."

He replied, "That's not shoes; that's sandals."

Undaunted, she persisted. "So, Bud, are you still in school or is school over for the summer?"

He looked at her blankly and blinked.

A little more insistent now, she repeated, "Are you still in school, Bud?"

My favorite literal-moment laugh is from earlier in the week, when I stopped at the natural products store in town to buy some hair dye to cover over the grey roots that have begun peeking out. For obvious reasons (mainly that he'd want to "help"), I never color my hair when Bud is around. So when he asked what I was buying I told him it was something to "do my hair."

I could see him puzzling over what it was that I was going to do to my hair, then he asked "To dry your hair?"

"No, to color my hair."

"No!" he shrieked. "Don't color your hair! Keep it brown!"

I quickly agreed and the crisis was over... but what color do you suppose he was picturing?